Dr Cherith Semple - DSR

ulster.ac.uk

Living and coping with head and

neck cancer – implications for

practice

Dr Cherith SempleReader in Clinical Cancer Nursing

Partnership postCurrent programmes of work

Clinical questions

Robustresearch

Impact on CARE

delivery

Show me the evidence

How can HNC patients post-treatment QOL be improved?

PhD

Testing post-treatment intervention

Cochrane review

National survey : HCPs views on survivorship care

QOL driven HNC follow-up clinic

Head and neck post-treatment QOL

Ongoing studies:• Impact of dental

loss• How well does

your obturator fit?

BACKGROUND: Patient’s journey

Primary unique

challenges of

H&NC

Location –

‘it’s in your face’

Function –

‘it affects what I eat

and how I speak’

Despite an impressive list of advancements in

medicine we cannot forget the other important

needs of patients, in particular emotional well-

being (Fallowfield, 1990)

Must consider quality of

life as well as quantity of life

Challenges of H&NCIs more than cure and survival

Right treatment, for the right patient at the the right time!!

World Health Organisation

Definition of QOL

‘individuals perception of their position

in life in the context of culture and

value systems in which they live

and in relation to their goals,

expectations, standards and concerns’

KEY: Get to know your patient

Patient journey

J Ad Nursing ORIGINAL RESEARCH

Changes and challenges to patients’ lifestyle patterns following

treatment for head and neck cancerCherith Jane Semple, Lynn Dunwoody, William George Kernohan, Eilis McCaughan & Kate Sullivan

Factors affecting QOL for patients with HNC

• Disfigurement

• Dysfunction of daily activities, e.g.

eating and drinking – PEG tubes

speech

• Pain

• Shoulder dysfunction

• Occupation

• Sexuality

• Depression and anxiety

• Fatigue

• Employment

Disfigurement

Enormous importance placed

on the head and neck area

People with facial

disfigurement feel

stigmatised in society

Disfigurement and adjustment –

caused by surgery or radiotherapy

• Most influential factor is not degree of disfigurement

BUT

Importance and meaning attributed to appearance

• Personality – optimism

• Cognitive processes – fear of being negatively viewed by others

• Preoperative expectations - regret

• Psychological – distress, depression, anxiety

• Social support

• Age

Implications for practiceWhile in hospital

• View the face and neck (to include oral cavity)

- begins the process of understanding how appearance has changed

- charting progress

- integrating this change into their internalised body image

• Encourage and facilitate self-care routines – shaving, brushing hair etc.

• Social interaction

Post-operatively

• Information and support

• Normalise – not to keep life on hold

• Social skills training

• Assess level of distress – may require input from psychological services

(CBT)

• Surgical interventions

Eating and swallowing difficulties

Causes:

• Mucosal and soft tissue loss / damage

– Fibrosis

– Lymphoedema

• Trismus

• Dentition

• Mucositis

• Xerostomia

Eating & swallowing

Many patients with intraoral reconstruction require a modified diet

– - 72% of patients with cancer to their oropharynx required a modified diet

Inhibits normal socialisation – social embarrassment- 67% feelings of shame while eating- 25% would not eat out following treatment

Correlation between eating and QOL

– Trial and error– Person-centred approach – dietetic input

Long-term feeding tube – very poor predictor of QOL

Xerostomia: Physiological Impact

❖Impaired lubrication of oral tissues

❖Impaired food bolus preparation

▪Buffering capacity compromised increased risk of

dental caries

▪Oral flora become more pathogenic candidacies

▪Demineralization of teeth and tooth decay

▪Periodontal disease can accelerate

▪Poor quality of sleep

Dental caries, fractures and chipping

Leads to dental loss

Dental loss leads to:

- altered dietary intake

- altered speech

- altered appearance

- social embarrassment

- reduced intimacy

Management may include:

• More frequent visits to the dentist

• Treatment of secondary infection

• Smoking cessation advice

• Adequate hydration/lubricants

• Products with fluoride

• Stimulants: chewing gum/sugar free sweets

• Humidification during sleep

Sexual functioning

Sexual dysfunction is common in patients with head and neck cancer – prevalence 33 - 50%

Due to

- altered appearance

- dry mouth (xerostomia)- coughing and mucus - fear of failure- unwilling partner - fatigue- pain

- HPV

LIMITED evidence:– some pointing to psycho-educational interventions targeting patients along with their partners - element of sexual counselling or therapy

ORN - Insufficient mandible

‘I become a bit of a recluse, if I didn’t have to go

out I didn't…. because of the fistula, the ooze out

of your face, you didn’t feel nice’

‘Eating was something you didn’t want to do….it

was a force feeding job, not to be looked forward

to.’

‘Trying to communicate with my own daughter

was a problem, even trying to read a bedtime

story.’

‘She knew I was different form other people and

would say daddy your face isn’t right, everyone

stares at you, things like that hurt.’

Free osteocutaneous fibular reconstruction

No requirement for opioids

Improved self-esteem

Positive engagement

Less social embarrassment

Change in activities with 8 yr old

daughter

‘It has changed my

life 100%, it has made a fantastic difference, the biggest thing is no pain, eating has become a pleasure instead of a miserable experience and I’m more confident socially.’

Pain

❖ Can occur as a consequence of the disease or from the treatment

❖ Often associated with recurrence

❖ Augmented because of the vital functions within the head and neck area

❖ 48% of patients had pain at diagnosis, 25% and 26% at 6 and 12 months

❖ Higher levels of pain - associated with depression and poorer QOL

Employment issues

Returning to the usual place of work can pose some

difficulty

70% of laryngectomies were employed at time of diagnosis

compared to 34% afterwards

Other studies demonstrated that patients may need to find

alternative employment, reduce working hours

Simply doing the same will not deliver the improvements that our cancer survivors expect NOR will be affordable for the NHS

Research – routine review clinic

How can HNC patients post-treatment QOL be improved?

PhD

Testing post-treatment intervention

Cochrane review

National survey : HCPs views on survivorship care

QOL driven HNC follow-up clinic

Head and neck post-treatment QOL

During HNC follow-up care

• 74% patients had at least one unmet need (Wells et

al 2015)

• 68% unmet post-treatment needs – many

psychological in nature (Henry et al 2014)

• Range of variables that can impact an individual’s

situation

AIM

Develop a holistic surgical head and neck cancer follow-up clinic, through personalisedidentification and prioritisation of post-treatment concerns and issues, on a touchscreen computer, to promote patient empowerment and enablement

Baseline Consultation in usual format

End of clinic visit:

UWQOLv4

PCI

Exit interview – PCC

Patient enablement instrument

Intervention Before consultation completion of:

UWQOLv4

PCI

Information from UWQOLv4 & PCI used to focus consultation

Following consultation:

Exit interview – PCC

Patient enablement instrument

Patient satisfaction on new model of follow-up

End of study One-to-one, semi-structured interview with clinical team

StudyDesignNon randomisedPre-test post-test

Patient confirmation

Raymond’s storyhttps://www.youtube.com/watch?v=WotHwFWLmmA

https://www.youtube.com/watch?v=WotHwFWLmmA

UWQOL v 4 – head and neck specific

Patient Concerns Checklist

Summary

• Education on signs and symptoms of recurrence

• Self-assessment tools (PCI and UWQOL v 4) on touchscreen

• Patient focused -‘No decision without me or about me’

Empower patients to develop confidence and skills for self-

management, allowing for self-referral or rapid access

INTERVENTION

Patients’ perception of topics discussed on PCC during baseline and intervention follow-up visits (n=44)

PCC item score

P value*Total PCC item

scoreTopics discussed0

(no)1

(unsure)2

(yes)

Overall QOL Baseline11 2 31

0.767

64

Intervention 9 3 32 68

Day-to-day activities Baseline 28 2 140.706

30


Work Baseline 29 2 130.392

28


Emotions Baseline 23 1 20

0.103

41

Intervention16 1 27

55

HN symptoms Baseline 5 1 38

0.319

77

Intervention2 3 39

81

Side-effects treatment Baseline17 2 25

0.228

52

Intervention12 1 31

63

Chronic non-specific Baseline 30 0 140.454

28


Impact of illness Baseline 36 1 71.000

15


*McNemar-Bowker test

PEI scores at baseline and intervention post-treatment visits n=44

*McNemar-Bowker test

PEI item score

P value*

Total PEI item scorePEI items

0(same or less)

1(better/more)

2(much better/more)

Coping with life Baseline16 15 13

0.977

41

Intervention15 17 12

41

Understand illness Baseline16 16 12

0.376

40


36

Cope with illness Baseline17 19 8

0.761

35


35

Keep healthy Baseline28 9 7

0.062

23


35

Confident about health Baseline23 11 10

0.402

31

Intervention21 14 9

32

Able to help yourself Baseline25 9 10

0.392

29


35

Patient satisfaction survey (n=44)5-point Likert scale

91% - definitely satisfied with completing questions on a touchscreen computer as part of routine follow-up

91% - considered the intervention helpful

87% - items on the UWQOLv4 and PCI were appropriate to be used as communication prompt aids at routine follow-up

96% - reported that items on UWQOLv4 and PCI items didn’t lead to distress

89% - definitely had adequate information on self-surveillance

Clinicians - ‘provided greater ownership and

control to patients’

• New information acquired despite the clinical team knowing the patients well

• Broader range of topics discussed during consultation

• Initiated onward referrals to members of MDT

• Accurate and consistent with the clinical assessment

• Identified patient priorities & concerns surrounding ‘what matters to them’

• Holistic approach to post-treatment management

• Promotion of self-management

What matters most?

Key findings

QOL questionnaire and question prompt list facilitate the

identification of unmet needs

Permit timely and appropriate intervention being initiated

Feasible to use in routine clinical practice

Impact of HN parental cancer

Fatherhood & cancer

Evaluation of Family Support Service

Face-to-faceeducation sessions & roll-out of CLIMB

E-learning

module

Family-centred Cancer CareDr C Semple & Prof E McCaughan

Emotional struggles of younger cancer patients

Change in epidemiology

Increase in the

incidence of H&NC for

men and woman in

their 30’s, 40s and 50s

e.g. oral cancer has

doubled in the past

three decades from 3.6

to 8.5 per 100,000 for

men aged 40 – 49

http://www.cancerresearchuk.org/

Impact of parental cancer

Fatherhood & cancer



E-learning

module



Experience of parents diagnosed with HNC

who are caring for young children

Dr Cherith Semple & Prof Tanya McCance

Literature review:

Keywords: ‘parent, cancer, communication, parenting’

• 13 studies focused on parents experience of cancer who have young

children

3 predominant themes

o being a good parent

o maintaining routine at home

o telling the children

• Notable gaps in the literature: studies – mainly focused on woman

IMPACT of HEAD & NECK CANCER on FAMILY LIFE

MINIMISING DISRUPTION to FAMILY LIFE

Support networks for the parents

At Diagnosis

Telling the childrenfear of

Fear of Death

and missingmilestones

During Treatment

Effects ofHospital

stay

Effect ofTreatment

On family life

Changing roles

Living with Cancer

Re-establishingRoutine family

life

Appreciation

of life

Living withuncertainty

At diagnosis

Fear of death &

missing

milestones

‘I didn’t know what

to do, all I could

think of was death.

.. I just though my

children;

I’m never going to

see them grow up’

Fear of telling the

children

‘Well the initial feeling was

total shock, this isn’t

happening to me. Yes, yea

em it wasn’t till I was half

way through the journey

home that I was thinking

well how am I going to tell

the children’. (P1)

Telling the children about their HNC

CHALLENGING

Dealing with their own emotions

Guilt and concern - how their diagnosis would impact the children

Wanted to protect the children acutely aware that their children were perceptive of changes at home

hospital visitschange of emotionsvisible nature of the cancer

❖Numerous decision – when, how much information

Lack of instructive support from professionals

Challenges confronting families

Communicating with the children about cancer - children's perspective

Data collection: semi-structured interviews and drawings

Key findings:

▪Sensed something was wrong at home

▪Desire for information, include ongoing updates

▪Viewed cancer as a serious condition

Effects of cancer treatment - children's reflections

Sick in bed Need for medicine

Misconceptions

Contagious

‘It’s a bit stupid but I used to think that you could catch

cancer

Blamed themselves

‘I thought it was my fault..by being annoying sometimes’

Education for frontline oncology staff

PARENTS PROFESSIONALS

Overwhelming consensus of lack of support

DESPITEdesire and need

Lack of skill and competence

Targeted education importantrole in psychological resilience

and positive coping

Developed a face-to-face education session:

AIM: HCP to empower parents with cancer to support their children

Impact of parental cancer

Fatherhood & cancer



E-learning

module



In conclusion

Remember ‘we treat people, not a

collection of parts’

http://irwmotorworks.files.wordpress.com/2011/07/auto-parts-i.jpg

http://www.sochealth.co.uk/wp-content/uploads/2013/12/disability.gif

Documents

Dr Cherith Semple - DSR